Friday 23rd July 2004 ( Day 18 )

Kids were setting off bangers outside Eckersly House between 02:00 and 03:00. Not the most unstressed night I've every had. Alex slept until nearly 11:00. It looks like he had a very quiet night. Kirsten and I went for breakfast, read books, played on the computer before he woke. I was sat at the end of his bed and happened to glance up for which I was rewarded with a huge smile, even though he had not moved. Alex must have been staring out of the door watching the world (or corridor) go by.
Joan, David, Andrew and Tom arrived about 13:00, Nardia, Siobhan and Barbara a little while later.
Alex has eaten two small yogurt's today and had a little juice. He's also munched a few cheesy crisps.
Kirsten is feeling very down. She has a bit of a temperature and a headache.
Tom played in the playroom for hours. We chased up and down the corridor on scooters. Alex was pampered by all the visitors until a little tired, they all left. Tom is staying here today - a last minute decision. We played for a while longer and at about 19:00 Tom and I zoomed off to Eckersly House as Alex fell asleep.
The lift on the way down stuck on floor 3. Tom was sure that the ghost had broken it.

Saturday 24th July 2004 ( Day 19 )

Today started with Tom prodding me on the nose. A quick look at the clock confirmed that it was too early - 7am. Tom was really quite desperate to see Alex again. I did not want to wake Kirsten or Alex this early - if they had had a good night or if it was a bad one and Alex had gone back to sleep, I would be in trouble if I disturbed them. So Tom and I went downstairs to have breakfast. Tom immediately trashed the Eckersly playroom. After an hour or so we quietly (as we could with Tom telling everyone about the ghost in the lift) went back in the hospital and straight into the Ward 10 playroom.
After an hour or so, I snuck into Room 18 to get the MagicSand for Tom to play with. Alex and Kirsten we wide awake and waiting for me. Waiting, it turned out, since about 7. Kirsten was feeling worse so after a while she took Tom back home.
Alex continued playing for a couple of hours but he seems tired but will not go to sleep. He's very moody. No food and only a couple of sips of drink. At 11:30 he finally fell asleep and stayed that way for three hours. He woke still moody. I tried playing in the playroom, drawing, reading books, showing videos, walking the corridor in the pram, with the baby walker and in the baby car. He was happy only for seconds at a time.
His DF118 sedative is now given at 6 hour intervals instead of 4. I don't think his moods are pain related, like they were a few days ago. Maybe he just needs more that two rooms and a corridor to view. When I took him out of bed this morning, the drugs line was not attached so the antibiotic was dripping onto the floor. Not much they can do about it so he just has to miss a dose. Luckily, the Hickman line was clipped off so his feed and blood was not draining out. That could have been a serious problem.
Kirsten is staying at home for a few days since she has a really high temperature now. I was planning to go into work on Monday and maybe Tuesday but it's more important that Kirsten stays away if she's infected. She also needs to have her energy levels up to look after Alex. After an early evening sleep, Alex woke at about 20:00, bright as a button and played in his cot until nearly midnight.

Sunday 25th July 2004 ( Day 20 )

Alex had a very restless night. Waking every couple of hours to have diarrhea or be sick until 07:15 when he was really sick. I asked for his feed to be stopped in case it was that making him retch. A few minutes later he was asleep. I thought I'd catch a little shut-eye before going for breakfast and a shower. I was woken but Alex throwing toys out of the cot at 09:30ish and then could not escape. His temperature during the night jumped up and down between 36.5C and 37.7C.
We played in the playroom for a while but Alex was not happy. His tongue looks really sore with little bumps all over it. He cannot stop dribbling as if he's teething.
Just before 11:00 Alex went back to bed and fell into a deep sleep. I made a break for breakfast at Eckersly House. Just as I was finishing my mobile rang, it was David to say he and Andrew were in with Alex. Alex stayed asleep for another hour or so and then woke in a bit of a bad mood. He quickly became tired since while all three of us joined him to play in the playroom and driving up and down the corridor. I managed to get him back to sleep at about 16:30, just after David and Andrew left. He woke after an hour or so. His three lines were removed for a while so we went for a long spin up and down the corridor to which he giggled and giggled.
The doc and consultant came to see him to judge whether to change his antibiotics since his temperature has stayed a little high. The conclusion was to wait to see if it went over 38C and then culture his blood and change the antibiotics.
His lines were re-attached at 19:00 so we put on some music in Room 18 and he danced away in his cot while trying to catch a half inflated balloon. His temperature is down to 36.2C, this should mean he's feeling a bit better.